Hi!
I'm new to the forum...a longtime lurker. I have had a cribriform plate CSF leak for almost nine years. I was only diagnosed last year, though.
I wanted to find out how common it is to develop Intracranial Hypertension POST leak repair....?
I did find one paper by Mokri at Mayo that discusses four patients:
Only registered and activated users can see links., Click Here To Register... but there isn't good followup--the patients seem to disappear into the woodwork.
What have your doctors told you about the incidence/etiology of IH following longstanding leak repair?
When does it usually occur...immediately, or several months later (as in the Mokri paper)?
How long does it last? (Is it transient?)
Have any of you with IH used alternate treatments to Diamox? What types of treatments? (Topomax, shunt) What was your experience?
Have any of you had shunts placed to prevent IH and then had them removed at a later date when your pressures normalized?
Thank you for any thoughts or ideas you are willing to share,
Darcey
I'm new to the forum...a longtime lurker. I have had a cribriform plate CSF leak for almost nine years. I was only diagnosed last year, though.
I wanted to find out how common it is to develop Intracranial Hypertension POST leak repair....?
I did find one paper by Mokri at Mayo that discusses four patients:
Only registered and activated users can see links., Click Here To Register... but there isn't good followup--the patients seem to disappear into the woodwork.
What have your doctors told you about the incidence/etiology of IH following longstanding leak repair?
When does it usually occur...immediately, or several months later (as in the Mokri paper)?
How long does it last? (Is it transient?)
Have any of you with IH used alternate treatments to Diamox? What types of treatments? (Topomax, shunt) What was your experience?
Have any of you had shunts placed to prevent IH and then had them removed at a later date when your pressures normalized?
Thank you for any thoughts or ideas you are willing to share,
Darcey
Comment